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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, February 24, 2018

February 13th Adnoidectomy and ear tubes

To some it’s a simple cold, but it’s just not clear cut with this guy. A cold has turned into 5 ear infections in the past three months. In turn he went on antibiotics which makes it so he can fight off the infection but it also caused his body to go neutropenic, that means he doesn’t have the soldiers to fight off something as simple as a cold so then he gets another cold, it turns into an ear infection and the ugly cycle begins again. But how do I explain to a ten year old that he has to have more shots to fix the neutropenia? So we visited with an ENT who confirmed that we needed to move forward with an adnoidectomy and ear tubes. So here we have this huge kid that almost fills the whole bed in his footie jammies. 



It was a super slow day at the hospital. Usually we are in and out, but this took a better part of the day. He felt mostly great, but his breath reeked!!! Recovery was pretty decent as well.. glad to check this off the list for this year. 

Thursday, February 22, 2018

February 11th

I needed this super hero to help me with some very tough jobs.....
 Cutting up junk mail. He really really wanted to use the scissors. I have an awesome friend who said its really great practice and who doesn't have gobs of junk mail that they need to be rid of?





It’s my birthday!!! February 4-7

We have been planning a warm bike ride for Jeff and his buddy JJ for ages, something always came up. Finally we decided to plan it around my birthday and go to a Vegas Show.... It did not disappoint!
While the guys road into Vegas, Denece (John's wifey) and I took in the sights... When climbing the stairs up to see these pictographs, I tried to not breath heavily so Denece wouldn't think I was a whip. But I sure felt the burn... I just needed to go up and down about ten more times for a really killer work out. I had to stop at a CVS and grab a few things and as I was hopping out of the car, a very nice man told be that I "have a very nice complexion". How sweet is that?




 On my actual birthday... We decided to join the guys for a ride. FAIL!!! I am not even ready to be riding with these pros. It's hard to think of my bike ride in just a couple of months, because I am not ready at all. I am determined to not embarrass myself and be ready.
 I kept asking Jeff, "when does this start to be fun?" I found out it was when I used my bike to get to Geocache locations.


 Since the bike ride was a bust, but laying by the pool was a very cool second option at 80 degrees I opted to not burn my skin to crispness. I am pretty certain the color of the towel was the same color as my legs. Another reason to keep them partially covered.
 We walked up and down the strip to work off an incredible dinner at this amazing buffet. I have never experienced food like this in one location/buffet style. We stopped to watch the lights at the Bilegio... While I was staring away, I noticed this guy walking toward us, with a amp and a mug. He was obviously having way too much fun. *wink* I made eye contact with him and gave him a big smile. He responded by offering me his joint. Which I politely declined.
 I was so excited to see Mystere from Cirque Du Soleil. This guy was roaming around the audience before the show and was so excited that we all had the same hair!!

 While the guys rode the next day we went to see the Hoover Dam




 And Denece and I had to stick our toes in Lake Mead.. is was super duper cold.... Not quite ready for boating weather but close.

We ate at a killer Burger joint on the way home called Hermies... SOOOOO GOOD....                        
It was a really great trip. I needed it for sure. Plus, it was fun to be with Jeff, Denece and John.

Wednesday, February 14, 2018

Happy accident

So I decided I needed a new look. I have always wanted to go platinum, so I started researching Pinterest and scouring the internet to find a platinum curly girl, with my same curl pattern and length. I looked for ages and finally found this awesome photo of Kimberly Schlapman, darling right????.....  

It was shorter than mine but the ONLY thing I could find and pretty much the same curl pattern, hers being a little looser but overall the same. So I planned... When I get an idea, I kind of have to go for it because I will chicken out. My friend who does my hair offered and offered but I was always so busy, or then she was busy and I finally just decided that I would do it without help...
 Before....
 After.....
Styled, completely dry but not the exact color because I hadn't toned it yet. I was devastated. Mostly because, as I was washing it out in the shower, great big globs of chemically burned off hair were coming out in my hand. And when I normally see a great bunch of curly squiggles were long noodles...

My black shirt was covered in breaking off hair. I was not an invincible hair dresser at all. My curls, that I use to despise as a child, but are the only thing that gives this girl a little confidence in her otherwise super flawed appearance, were gonzo....
So I text my boyfriend/hubby...




He helped..

Diane was over and saved the day with the kids. I was able to go to the beauty supply for toner without all the short people in tow.

I took the shears and chopped off 9 inches before I toned it. 
 Now the color was better, but I needed my friend Missy to fix the cut.
 Still fit in a pony tail.
 She tried to save as much as possible and I adore her for it.
 Another 3 inches came off...
 Then I styled it the next day and purposefully textured it. I took off ends that still looked frazzled and  gave it the last bit of shape.
 So the lesson is....

#1. I am not invincible and should probably wait for help...

#2. There is a really good reason there aren't any long platinum curly girls with a WO! WHITE FRO.... Because curly hair is super fragile and can't handle the stress & decolorizing, and you will either burn it off, or loose the curl.


But after all those tears, I am happy to report that I am feeling a lot better. I had to get a keratin rebonder. Which I am convinced brought back the curl. I am mostly thankful for everyone's kind words... That has made this a happy accident, after all. 

plus now, I get to check this off of my 'Live List'...

Our shower was not happy, this huge hunk of nasty bleached hair had to be removed for the drain to work again. yuck-o

January 12, annual biopsy

He needed a haircut ssssoooooo bad...Besides that, Alex's Cath showed wonderful pressures, 7 gradient through the aorta due to where his new heart is grafted onto his original anatomy. Scar tissue is causing a band to form. But our docs won't even change anything until the pressure is above 10. Which completely depends on Alex's overall growth. Wonderful news! Then his biopsy came back squeaky clean. 

January 28th

Just another day in paradise.. With whip topping on a spoon.



January 23 Happy Heartiversary

We have had such great news about Alex's heart health so far this year. While his body still needs tweaking here and there, we are happy that it usually isn't something major. And we are extremely grateful to our amazing donor family and their sweet little Julie. Having been born with a congenital heart defect, we knew that Alex's heart would some day wear itself out. We never could have imagined that it would be when he was only six years old. Then to be 7 when he got his new heart means an exchange of thinking. He needs to be on medication his whole life so that his body doesn't see his new heart as foreign and try to reject. There have been little complications for those medications. But his life has changed for the better. His energy and ability to do the same thing as his siblings and peers is amazing.

My sweet friend Michelle and her cute daughter Katie remembered our heart day and brought us these balloons and treats (1095 huge M&M's for each new heart day) 
We took treats to his class, and had a special dinner out. He chose Costa Vida.. Yummy!!! It was a great day to remember, to be grateful for and to enjoy each other!!!